The emotional well‐being of parents with children at genetic risk for type 1 diabetes before and during participation in the
            <scp>POInT</scp>
            ‐study

Janssens, Martha; Winkler, Christiane; Besser, R; Dżygało, Katarzyna; Fehn, Annika; Hommel, Angela; Lange, Karin; Larsson, Helena; Lundgren, Markus; Roloff, F.; Snape, Matthew D; Szypowska, Agnieszka; Weiß, Andreas; Zapardiel‐Gonzalo, Jose; Ziegler, Anette‐Gabriele; Gündert, Melanie; Haupt, Florian; Arnolds, Stefanie; Bißbort, Miriam; Blasius, Karina; Friedl, Nadine; Gezginci, Cigdem; Göppel, Gertrud; Heigermoser, Martin; Höfelschweiger, Bianca; Jolink, Manja; Kisfügedi, Krisztian; Klein, Nadine; Lickert, Ramona; Matzke, Claudia; Alvarez, Kim Muñoz; Niewöhner, Rebecca; Scholz, Marlon; Voß, Franziska; Gonzalo, José Maria Zapardiel; Schmidt, Sarah; Sifft, Philipp; Kapfelsberger, Heidi; Vurucu, Merve; Sarcletti, Katharina; Sporreiter, Melanie; Jacobson, Stefanie; Zeller, Ivo; Warncke, Katharina; Bonficio, Ezio; Schütte‐Borkovec, Katharina; Casteels, Kristina; Jannsen, Charlien; Rochtus, Annre; Jacobs, Alice K.; Morobé, Hilde; Paulus, Jasmin; Vrancken, Brontë; Driessche, Natalie Van den; Heyste, Renka Van; Houben, Janne; Smets, Leyla; Vanhuyse, Veerle; Bonifacio, Ezio; Berner, Reinhard; Arabi, Sari; Blechschmidt, Ruth; Dietz, Sevina; Gemulla, Gita; Gholizadeh, Zahra; Heinke, Sophie; Hoffmann, Raphael; Lange, Franziska; Morgenstern, Robert; Ehrlich, Franziska; Loff, Anja; Weigelt, Marc; Zubizarreta, Nicole; Kordonouri, Olga; Danne, Thomas; Galuschka, Laura; Holtkamp, Ute; Janzen, Nils; Kruse, Carolin; Landsberg, Sarah; Marquardt, Erika; Reschke, Felix; Semler, Kerstin; Berge, Thekla von dem; Weiskorn, Jantje; Ziegler, Anette G.; Achenbach, Peter; Bunk, Melanie; Färber‐Meisterjahn, Simone; Grätz, Willi; Greif, Ines; Herbst, Melanie; Hofelich, Anna; Kaiser, Melina; Kaltenecker, Heidi; Karapinar, Esra; Kölln, Annika; Marcus, Benjamin A.; Munzinger, Annette; Ohli, Jasmin; Ramminger, Claudia; Reinmüller, Franziska; Vollmuth, Veronika; Welzhofer, Tiziana; Ołtarzewski, Mariusz; Dybkowska, Sylwia; Groele, Lidia; Kajak, Katarzyna; Owczarek, Dorota; Piechowiak, Katarzyna; Popko, Katarzyna; Skrobot, Agnieszka; Szpakowski, Rafał; Taczanowska, Anna; Zduńczyk, Beata; Zych, Anna; Lernmark, Åke; Agardh, Daniel; Mortin, Sofie Alström; Aronsson, Carin Andrén; Bennet, Rasmus; Brundin, Charlotte; Dahlberg, Susanne; Fransson, Lina; Jonsdottir, Bergling; Jonsson, Ida; Maroufkhani, Sara; Mestan, Zeliha; Nilsson, Caroline; Ramelius, Anita; Amboh, Evelyn Tekum; Törn, Carina; Ulvendag, Ulrika; Way, Susanne; Todd, John; Haddock, Genevieve; Bendor‐Samuel, Owen; Bland, James; Choi, Edward; Craik, Rachel; Davis, Kimberly A.; Hawkins, Sophia; Horra, Arancha de la; Farooq, Yama G; Scudder, Clare; Smith, Ian; Roseman, Fenella; Robinson, Hannah; Taj, Nazia; Vatish, Manu; Willis, Louise; Whelan, Conor V.; Wishlade, Tabitha

doi:10.1111/pedi.13448

Cited by 7 publications

(2 citation statements)

References 31 publications

(88 reference statements)

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“…Overall, the clinical presentation of children participating in the population-based Fr1da screening was comparable to that of children diagnosed with presymptomatic type 1 diabetes by islet autoantibody screening in natural history studies [7,11], or clinical trials [38], and similarly with respect to stress and anxiety levels in parents in response to screening. Previous findings from the Fr1da study indicated that psychological stress scores were transiently elevated in mothers of children diagnosed with presymptomatic type 1 diabetes in the Fr1da screening and that the distress reported by the families was low or moderate in the majority of families [18], consistent with findings in children diagnosed with islet autoantibodies in natural history studies [39,40] and in parents of children identified with an increased genetic risk for type 1 diabetes [41,42]. With an appropriate education and care programme, islet autoantibody screening and a diagnosis of presymptomatic type 1 diabetes appear unlikely to lead to the level of parental stress observed in families of children diagnosed with stage 3 type 1 diabetes without prior screening [18].…”

Section: Discussionsupporting

confidence: 75%

Children diagnosed with presymptomatic type 1 diabetes through public health screening have milder diabetes at clinical manifestation

Hummel,

Carl,

Friedl

et al. 2023

Diabetologia

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Aims/hypothesis We aimed to determine whether disease severity was reduced at onset of clinical (stage 3) type 1 diabetes in children previously diagnosed with presymptomatic type 1 diabetes in a population-based screening programme for islet autoantibodies. Methods Clinical data obtained at diagnosis of stage 3 type 1 diabetes were evaluated in 128 children previously diagnosed with presymptomatic early-stage type 1 diabetes between 2015 and 2022 in the Fr1da study and compared with data from 736 children diagnosed with incident type 1 diabetes between 2009 and 2018 at a similar age in the DiMelli study without prior screening. Results At the diagnosis of stage 3 type 1 diabetes, children with a prior early-stage diagnosis had lower median HbA1c (51 mmol/mol vs 91 mmol/mol [6.8% vs 10.5%], p<0.001), lower median fasting glucose (5.3 mmol/l vs 7.2 mmol/l, p<0.05) and higher median fasting C-peptide (0.21 nmol/l vs 0.10 nmol/l, p<0.001) compared with children without previous early-stage diagnosis. Fewer participants with prior early-stage diagnosis had ketonuria (22.2% vs 78.4%, p<0.001) or required insulin treatment (72.3% vs 98.1%, p<0.05) and only 2.5% presented with diabetic ketoacidosis at diagnosis of stage 3 type 1 diabetes. Outcomes in children with a prior early-stage diagnosis were not associated with a family history of type 1 diabetes or diagnosis during the COVID-19 pandemic. A milder clinical presentation was observed in children who participated in education and monitoring after early-stage diagnosis. Conclusions/interpretation Diagnosis of presymptomatic type 1 diabetes in children followed by education and monitoring improved clinical presentation at the onset of stage 3 type 1 diabetes. Graphical Abstract

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Section: Discussionsupporting

confidence: 75%

Children diagnosed with presymptomatic type 1 diabetes through public health screening have milder diabetes at clinical manifestation

Hummel,

Carl,

Friedl

et al. 2023

Diabetologia

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“…The psychological difficulties and burdens faced by parents can influence their children's emotions and disease management, which in turn can impact adherence to treatment [20,25]. Therefore, it is crucial to alleviate the burdens of parents caring for very young children with diabetes, as their well-being is intrinsically linked to their children's psychological, physical, and social development [26].…”

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confidence: 99%

The burdens faced by parents of preschoolers with type 1 diabetes mellitus: an integrative review

Choi¹,

Shin²

2023

Child Health Nurs Res

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Purpose: This study examined the literature concerning the burdens of parents of preschool-aged children diagnosed with type 1 diabetes mellitus.Methods: We employed an integrative review methodology based on Whittemore and Knafl's framework. The literature search was conducted using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines across four electronic databases: PubMed, Web of Science, the Cumulative Index to Nursing Allied Health Literature (CINAHL), and PsycINFO. Ultimately, 18 articles were included in the review.Results: The review yielded four themes: (1) parental burdens, (2) factors related to the burdens, (3) coping strategies, and (4) implications for clinical practice. Parents experienced psychological, physical, and social burdens due to the diabetes care of their children. Several factors influenced burdens, including child-related characteristics such as age, severity of diabetes, and hospitalization experience, as well as parental factors like family income, race, and residential area. Parents initially felt burdened when their child was diagnosed with type 1 diabetes, but over time, they often adapted to the situation through support and sharing of responsibilities. Parents desired education and interventions reflecting the unique characteristics of preschoolers.Conclusion: This integrative literature review revealed that parents experience numerous burdens when their child is diagnosed with diabetes. Future research should focus on developing interventions to address parents' psychological difficulties, including tracking parental psychological changes over time. Tailored nursing interventions should also be provided to parents of preschool-aged children, as opposed to the more generic nursing interventions traditionally applied across all age groups of children in clinical settings.

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Expanding the Role of Continuous Glucose Monitoring in Modern Diabetes Care Beyond Type 1 Disease

et al. 2023

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Application of continuous glucose monitoring (CGM) has moved diabetes care from a reactive to a proactive process, in which a person with diabetes can prevent episodes of hypoglycemia or hyperglycemia, rather than taking action only once low and high glucose are detected. Consequently, CGM devices are now seen as the standard of care for people with type 1 diabetes mellitus (T1DM). Evidence now supports the use of CGM in people with type 2 diabetes mellitus (T2DM) on any treatment regimen, not just for those on insulin therapy. Expanding the application of CGM to include all people with T1DM or T2DM can support effective intensification of therapies to reduce glucose exposure and lower the risk of complications and hospital admissions, which are associated with high healthcare costs. All of this can be achieved while minimizing the risk of hypoglycemia and improving quality of life for people with diabetes. Wider application of CGM can also bring considerable benefits for women with diabetes during pregnancy and their children, as well as providing support for acute care of hospital inpatients who experience the adverse effects of hyperglycemia following admission and surgical procedures, as a consequence of treatment-related insulin resistance or reduced insulin secretion. By tailoring the application of CGM for daily or intermittent use, depending on the patient profile and their needs, one can ensure the cost-effectiveness of CGM in each setting. In this article we discuss the evidence-based benefits of expanding the use of CGM technology to include all people with diabetes, along with a diverse population of people with non-diabetic glycemic dysregulation. Supplementary Information The online version contains supplementary material available at 10.1007/s13300-023-01431-3.

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The emotional well‐being of parents with children at genetic risk for type 1 diabetes before and during participation in the POInT ‐study

Cited by 7 publications

References 31 publications

Children diagnosed with presymptomatic type 1 diabetes through public health screening have milder diabetes at clinical manifestation

Children diagnosed with presymptomatic type 1 diabetes through public health screening have milder diabetes at clinical manifestation

The burdens faced by parents of preschoolers with type 1 diabetes mellitus: an integrative review

Expanding the Role of Continuous Glucose Monitoring in Modern Diabetes Care Beyond Type 1 Disease

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